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| Ptosis crutch glasses - can't find! |  | ||
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Posted by: bananasplit ® 01/25/2013, 12:01:08 |
Haven't been successful finding any ptosis crutch glasses in Canada but my father recently started wearing a tight headband around the eyebrow area and this seems to help a little with the eye shutting. The slight pressure on some of the eye muscles I guess does something to 'confuse' the spasm tendencies? No idea. If anyone knows where I can buy ptosis crutch glasses please let me know! And on the topic of glasses, after reading the last BEB newsletter, I'm looking at some FL-41 shades from Axon - anyone have experience with these? Many thanks for this wonderful ideas sharing board! |
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Posted by: Susi ® 01/25/2013, 18:20:30 |
I am in the US and I just got FL-41 tinted prescription eye glasses from the Moran Eye Center in Salt Lake City, Utah. We did everything via email and phone and they were wonderful to work with. I bought frames here, got the measurements done for my bifocals, sent the frames and my prescription out to Utah. I asked to have the indoor tint. They did a great job with the lenses and tint and I did not think their prices were unreasonable. They put on the anti reflective coating and scratch protection after they tinted the lenses.
As for how much they help-it took me a while to adjust to the prescription because they were slightly different from my old glasses. But I like to wear them now. I am still figuring out when I should wear them and when I should switch to my old un-tinted glasses. FL 41 does not help with glare but I do pretty well with wearing my over-the-glasses sun glasses over the tinted ones. I also do not see much improvement when I am on the computer. But they do seem to help in fluorescent lightning. I wish they helped me more but I do not feel that I wasted my money. I can wear them all day without a problem. When it gets dark outside I have to switch to my old glasses because the lighting in my house is not very bright. I don't know if a darker tint would make a difference with the computer or outside glare. Others on the board can probably tell you more. Susi |
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Posted by: pdb ® 01/26/2013, 14:07:53 |
Do an internet search for ptosis crutch and you will find several options - places to contact that will make them. The one I used is Rick Williams at (847)742-4745 or mail to:
He comes up on the search at the site www.eyeglassrepair.net Several other people on this board have used his services also. Cheers Peter |
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Posted by: Norah-Jean Perkin ® 01/26/2013, 18:43:52 |
My optometrist in Stratford made me up a pair of ptosis crutch glasses (from some glasses I used to wear). Ultimately I was disappointed in them because, though they helped keep my eyes open, my eyes felt awfully dry and my mouth seemed to spasm more. Anyway, if your optometrist is at all adeventurous, he or she can find plenty of info on the internet re making them. It's easiest if the frames are metal (apparently titanium won't work), and the crutch parts can probably be found online or (in my case) my optomestrist made them himself and soldered them onto my frames. NOrah-Jean in Stratford |
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Posted by: Judy from Toronto ® 01/27/2013, 13:38:44 |
Some time ago I mentioned to my optometrist that I might want some ptosis crutch glasses and she said, she could order them for me. I decided that I did not want them after all, but obviously they are available in the Toronto area. |
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Posted by: June in Toronto ® 01/27/2013, 18:08:37 |
You could contact the Canadian BEB Foundation (BEBCRF) via the website (linked below). They most probably will have some ptosis crutch contacts for you. June in Tornto
Related link: http://www.blepharospasm.ca |
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Posted by: felini ® 01/29/2013, 08:28:57 |
Lundie Loops are available from Mr Lundie here in the UK. I have used them for over two years now. Having Apraxia I depend on them pretty well totally. The Botox injections certainly help but I never get more than a day or so without the need for props. If you decide to go down that road I can supply contact details. The main requirement is to have plastic frames. I tried Ptosis props but could not get on with them. They appear to be freely available from Opticians in UK but they do require measurements whereas the Loops are easily adjustable. I have only met one user of the Ptosis prop and they broke very easily. |
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Posted by: pdb ® 01/29/2013, 11:57:39 |
Lundie loops may well suit some people better than the ptosis crutch. On the other hand, well-made ptosis crutches are unlikely to break, so I'd suggest that the problem you refer to lies with the manufacturer. I've had ptosis crutches fitted to two separate pairs of glasses over the years (as my prescription changed) and neither I not others that I know have had any breakage problems. I do agree that measurement and fitting are important to get right with the ptosis crutch, and for that reason I'm interested in the idea of trying the Lundie loop. Please email me the contact information Peter |
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Posted by: felini ® 02/03/2013, 06:59:08 |
Hi Peter
The gentleman who supplies and fits Lundie Loops is Mr John Lundie. His father developed them for himself originally as he suffered from Myesthenia Gravis. In case you are not aware this is weakening of muscles and as a result eyelids tend to drop. Not quite the same as BEB obviously but the need to stop eyelids 'misbehaving' is the same. His address is 76 Parc Gilbertson, Pontardawe. SWANSEA, SA8 4PU UK. landline 01792 863742. As I think I said before you will need plastic frames and if you are in the UK Mr Lundie returns them by return of post almost. I usually ring him first to ensure he is available and up to present the cost has been £40. Regards |
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